Question : Following in from previous post, when I saw... - NRAS

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Eiram50
Eiram50

Following in from previous post, when I saw the lung specialist she said to me that as I was in methotrexate, I should have been having my lungs checked every year. I’ve never had any lung function testing of any sorts, ever.

Has anyone else taking methotrexate had their lung function etc checked?

152 Replies
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No I’ve never had a lung function test over 3 1/2 years since I started methotrexate

Eiram50
Eiram50
in reply to J1707

Yes, I was very surprised when she said this to me. She said everyone taking methotrexate long term should be having them.

It does make me wonder whether the scarring/issues I now face with my lungs, which she said had been caused by the methotrexate, could have been avoided - or at least picked up before significant damage occurred.

J1707
J1707
in reply to Eiram50

It could be possible... we all serm to get different advice from our medics

wishbone
wishbone
in reply to J1707

My respiratory consultant reckons it was RA inflammation that scarred my lungs. While I've read other peoples posts saying their consultants blamed methotrexate for their scarring....?? :-O

I had a lung x ray before I started the MTX and was told to ask my local GP for one every year as an MOT OR if I had any issues with the lungs to tell the rheumy team so they would organise. If I want x rays for a reason that I feel is legitimate I tend to ask my local GP and he always discusses reasoning and then signs them off.

Eiram50
Eiram50
in reply to Deeb2908

I didn’t have any advice like this either. My sense from

What she was saying was more that we should be monitored and that this was part of it. Not so much about whether we felt we needed it and then should seek it.

Deeb2908
Deeb2908
in reply to Eiram50

I had a really good nurse and she said you will know if something is not right and just speak up. I call them if I have a concern and they are good sometimes a 5min chat or they get me in to see them or consultant. SO for me so far I cannot complain.

So if you have a l ung concern talk about so they know.

Eiram50
Eiram50
in reply to Deeb2908

That’s good that your experience has been positive.

I too have a fab rhuemy although I’ve never had cause to contact the nurse.

This isn’t about having a lung concern.

Although I’d been feeling a bit breathless over the past months, it was nothing that concerned me and I put it down to numerous surgeries and subsequently, being on and off my medication. I had no cause for concern until out of the blue I just couldn’t catch my breath and ended up in hospital.

This is mire about everybody having the same information and if the advice is that When in methotrexate, you are to be checked, that you have access to this. Surely in doing so, prevention is better than cure.

Deeb2908
Deeb2908
in reply to Eiram50

It was all done on my first appointment I was surprised but she explained they then have something to compare too. And yes agree it would be great if eveyone got same base info but this is such a complex illness that maybe this is why we all get varied info based on what we are presenting.

KittyJ
KittyJ
in reply to Deeb2908

The thing is that the fact we have to present with something before getting our lungs checked may often be too late. You would have thought that something like that would be standard across the board. Seems not though 😕

Eiram50
Eiram50
in reply to KittyJ

That’s exactly where I’m at kitty. My lungs have been damaged and an CT scan is to determine the result. If having the lung tests I should’ve been getting, maybe I’d be in a different position - maybe not, but I would have liked to have tried to avoid what now may lie ahead

KittyJ
KittyJ
in reply to Eiram50

Exactly Eiram, small changes might have been picked up on. I’m sorry this is now happening to you 🤗

Eiram50
Eiram50
in reply to KittyJ

I agree and I think that’s why I feel a tad angry. That and of course, it frightens me. I just think if checks and balances are uniform and in place then there may be some things that we are able to avoid or at least catch early? Particularly when the medical profession are aware of the potential risks.

Anyway, I’ll get over it. Thanks for your support.

Eiram50
Eiram50
in reply to Deeb2908

Absolutely agree deeb, it Is a complex disease and it affects each of us differently. As does the medications. However, the risk the medication carries is the same for all and therefore, my feeling is we should all be afforded the same information about checks and balances x

Deeb2908
Deeb2908
in reply to Eiram50

totally agree and I think Mmrr made a great comment recently on the fact she had someone who was outdated to who she has now and the difference is ridiculous. All of us should have the basic levels set out so we all have the same as the starting board. Love a tick sheet!

Actually this has made me want to pen a letter to NICE(?) and look for the rheumatologists board as a, YOU should be doing this not the patient. As in many ways not having a base levels of tests and checks is surely costing the NHS huge amounts as if we get more complications from being unchecked then this costs more to sort.

Eiram50
Eiram50
in reply to Deeb2908

Yes, this has occurred to me too x

I haven’t heard this either Eiram, I’ve been on Mtx 20 years and have never had my lungs checked or any testing. Makes sense to though, as you say, better to know sooner about any problems rather than later when the damage is done.

Yes, I had a baseline chest x-ray before starting MTX and since then have had regular lung function tests. I am offered an annual chest x-ray but I haven’t taken that up in last couple of years as have had too many scans using radiation for my comfort. However rheumy always listens to my lungs at every appointment.

I did start to get breathless a couple of years ago and had CT scans of lungs which showed up nodules. But they hadn’t developed on a follow up CT so has been put down to my dissolute youth and is not the cause of my breathlessness.

Eiram50
Eiram50
in reply to helixhelix

Thanks HH. I can’t help but feel a bit angry that I was never given this information. I’m not saying that it would’ve changed the problems I’m now facing but, it would have possibly been helpful.

helixhelix
helixhelix
in reply to Eiram50

I’d feel angry if I were you! Not having even a base line check is outrageous. But if it has all come on suddenly then unlikely it would have been picked up even if you had had regular checks, but it’s the principal! We have a disease known to cause heart and lung problems and take drugs also known to cause heart and lung problems, so these should be checked. And the GP should be alert to this too, and ask questions.

I was on maximum dose methotrexate for 7 years and after initial tests to check I was suitable I was never checked again. It would be a good though if people were checked.

Eiram50
Eiram50
in reply to sunnyweek

Agreed. Especially as the specialist told me it was specific to MTX.

I only have lung function tests or Spirometry tests because I have Bronchiectasis (a lung disease) but apart from the initial chest XRay brfore starting MTX I have no other checks.

poems, do you take mtx with your lung condition?

Yes my Rheumy knows about my Bronchiectasis.

Interestingly my chest consultant told me to stop taking mtx, not because it could make my condition worse, but because it can cause another lung condition that could mask the progress of what I have, which is different to what you have. He did not say what the mtx related condition was.

crashdoll
crashdoll
in reply to wishbone

I’ve heard conflicting options on methotrexate and lung disease. I saw an ILD specialist who wasn’t concerned about remaining on it. She said if it is going to cause the specific damage they usually see, it’ll be early on after you start it. As I’d been on it years before the onset of my lung issues, she was adamant that it’s safe. Another respiratory doctor I saw was more hesitant.

Eiram50
Eiram50
in reply to crashdoll

It’s confusing.

The specialist did not mention ILD but said to me the scarring and ground glass in my lungs was due to the methotrexate? I am waiting for appointment for CT scan so will know

more then.

wishbone
wishbone
in reply to Eiram50

Good luck with the scan Eiram.

Eiram50
Eiram50
in reply to wishbone

Thank you x

wishbone
wishbone
in reply to crashdoll

I'd been on methotrexate for over 10 years before the onset of my lung issues so going by what you say CD, it does seem as if my consultant was right saying my RA was the culprit and not meds. Not only that, but as you may already know, it was during a prolonged horrific flare that I developed a persistent cough, which I'm convinced was the inflammation getting into my lungs. It was when I went back to see my rheumy during the flare that a chest x-ray showed abnormalities with my lungs...and the rest is history as they say!.............................................

BonnieG123
BonnieG123
in reply to wishbone

You've sure had a bout with this RA. Sorry, wishbone.

wishbone
wishbone
in reply to BonnieG123

It's been a bit of a life changer that's for sure!

To think, seventeen years ago when my GP called me in to tell me my blood test proved positive for rheumatoid arthritis, I never appreciated just how serious it was and felt relieved that all I had wrong with me was a bit of arthritis. :-O No wonder my GP looked so blinkin' glum when she told me! :-(

Thanks for your thoughts Bonnie.

BonnieG123
BonnieG123
in reply to wishbone

When I first got the diagnosis I was relieved that “it” had a name. The prednisone made it all go away. Wow! Then came, no you can’t stay on the prednisone. Then came MTX and I was so sick from it I said no more. I know I have to get back on something but I’m waiting until my knees get done. First knee, next week.

Eiram50
Eiram50
in reply to BonnieG123

Very best of luck for next week Bonnie

BonnieG123
BonnieG123
in reply to Eiram50

Thanks, Eiram!

wishbone
wishbone
in reply to BonnieG123

Good luck with the op Bonnie.

BonnieG123
BonnieG123
in reply to wishbone

Thank you, wishbone.

When I was given methotrexate. With in months I started getting breathing problems they gave me lots of tests said I had COPD.

When I asked if the two was connection RA and COPD was told not. That was over 15 years ago.

shareasmile
shareasmile
in reply to Dilly2

MTX most definitely caused lung issues for me, but it is certainly difficult to get any doctor to admit it. I suffered lung and rib pain plus a dry cough with every breath. I thought I had broken ribs from coughing so hard. I had a pulmonary function test and was diagnosed with asthma at age 52. I totally blame the MTX and I will not be convinced otherwise. Thank God I am done with that drug.

Eiram50
Eiram50
in reply to shareasmile

Strangely, she also diagnosed me with asthma- never had it in my life. I’m 53!

academic.oup.com/rheumatolo...

I found this article just now and worth a read.

Eiram50
Eiram50
in reply to Deeb2908

It’s worrying, isn’t it. I take leflunomide and biologics too. This is a good article, thank you.

I was taken off methotrexate as I was having too many side effects. My gp said she was happy I was taken off it as it can cause damage to lungs, I’m now on sulphasalazine and apparently that doesn’t.

nomoreheels
nomoreheels
in reply to Maz63

All of the more commonly prescribed DMARDs except hydroxychloroquine carry the risk of pulmonary toxicity Maz63, although MTX is the one DMARD more commonly thought of when discussing lung disease.

For that reason rheumy won't give me any type of DMARD except hydroxy, which I was on for a couple of years. According to my chest consultant it's possible that baricitinib, which I'm currently taking a low dose of, can also cause lung issues. Do you know if biologics can too heelsy? I imagine they can, but perhaps the risk is lower than with DMARDs?

I don't honestly know wishy. I've come across anti-TNF's (adalimumab, etanercept & infliximab) being causal but not biologics. As you suggest though it seems less likely than with DMARDs, excepting HCQ. Definitely something to discuss if you need to move on from baricitinib, which I do hope isn't necessary.

Thanks heelsy, I know rheumy don't want me on anti-TNFs or biologics because I'm at high risk of getting an infection. Other than that I'm not sure what's best for me to take...very little by the seem! Think there's another JAK Inhibitor to try if I need to stop baricitinib. Hopefully that won't be necessary as you say.

Eiram50
Eiram50
in reply to nomoreheels

I thought all the anti TNFs were biologics? I’m on etanercept and it’s always referred to as a biologic?

I can’t believe how much I’m learning today! It’s like being back in uni 👍

nomoreheels
nomoreheels
in reply to Eiram50

The difference is antiTNF's are specifically human tumour necrosis factors or TNFα inhibitors, as are their Biosimilars, all target the same molecule. Two are missing from the list (not being thought to affect the lungs) golumimab & certoluzimab pegol. You'll notice that all but one end in 'mab', this stands for monoclonal antibody, the way that they work. The one that doesn't, etanercept, was the first to be developed & works slightly differently whilst still being a TNFα.

I found this an easily understood explanation of how such meds get their names ashclinicalnews.org/viewpoi... It's from a US site so references their authorities etc but still useful.

The term biologics applies to them all but TNFα inhibitors/blockers are not always specified as such, still, it's not incorrect to call them biologics. Hope I’ve explained this enough to be helpful!

Eiram50
Eiram50
in reply to nomoreheels

That’s really helpful, thank you. I’ve genuinely learned a lot here today. And I really appreciate you and everyone else, taking the time to respond as well as support and ease my fear ( a little).

Oh well, onwards and upwards.

Thanks NMH

Eiram50
Eiram50
in reply to nomoreheels

Interesting article.

Mmrr
Mmrr
in reply to nomoreheels

Great article

Hi Max,

I’m just starting sulphasalazine in place of steroids (hooray). How long have you been on it and what are the main differences?

Thank you

Hi I must admit the pain is worse on it but certainly no side effects...I have review on Monday with specialist who was talking about adding in another med .... I also take naproxen daily.

Nope! I took it for seven years ...never even had a cold and none of the literature says you need to have pulmonary tests ...I think our Rheumatologists would only recommend a tests they knew we had a lung problem.

Did your rheumatologist know you were seeing a lung specialist?

Eiram50
Eiram50
in reply to AgedCrone

No. I was hospitalised a couple of months ago and the lung specialist stems from this. My point was, if this is the guidelines/ advice when in methotrexate, if shouldn’t differ regardless of rheumatologist seen.

AgedCrone
AgedCrone
in reply to Eiram50

If you read that report it does say if your base line lung function doesn’t change whilst you are receiving the DMARD’s - eg Mtx there would be no need to be referred for any investigations.

Why didn’t you tell your Rheumatologist you had been hospitalised?

If he hadn’t been advised you were having problems ...he would go on thinking you were doing well.

It is a salutary reminder that we should all drop a note to our rheumatologist if another specialist wants to prescribe us new drugs.

I don’t think there is very much joined up thinking between consultants in the NHS right now....so we all have to be aware & keep our doctors informed.

In fact your GP would presumably have received a report from the lung specialist ......so maybe he should have picked it up?

I hope everything is getting sorted & you are doing OK.

Biofreak
Biofreak
in reply to Eiram50

I agree there should be a common approach followed by all rheumatologists when prescribing methotrexate because it is clear from reading lots of posts from many people on this site that pulmonary problems are a common thread and by no means isolated incidents. This applies not only to methotrexate but other RA drugs as well. Pulmonary problems are quite common in RA sufferers and not being medically trained it's hard to know whether this is down to the drugs we take or the disease itself or a combination of the two. So that said it's probably a good idea for RA patients to have their lung function checked on a regular basis as a matter of course as part of rheumatology care.

Eiram50
Eiram50
in reply to Biofreak

Absolutely agree and it should be uniform in approach.

wishbone
wishbone
in reply to Biofreak

I'm not sure the doctors know what causes what either.

I wasn’t having problems until I had them? As everything goes in TRAK, he will be aware of what’s happened.

How do you determine if jade line function changes if you’re not being tested?

And I’m sorry, I am absolutely fine with taking responsibility for my health and would always share appropriately as and when difficulties arise. But as a patient, it is not my role to foresee potential adverse drug difficulties nor to promote communication between the medical professionals.

Interesting on how often you should you should check.

radiopaedia.org/articles/me...

coming in a bit late on this as links were down here [storm Gloria in Valencia province] but RA was diagnosed Apr '15, gp gave me statins!!, collapsed May'15, 4-5wks in hospital, out in w/chair end ofJuneish, for anniversary cruise, just pred then MTX abt Oct'15. Lungs checked b4 starting MTX, by jan16 onto injections. Maybe April 16 reported cough, all meds stopped. Scan + function tests showed 25% loss of lung function. Back in w/chair sulfasalazine started. but bad psych effects. reduced ssz but diffs; june 17 - july 17 infusion course of Truxima. {RTX biosimilar]. Can manage on annual infusions so far. Hope this helps. Lungs now 95% function via swim n sing :). xx

Eiram50
Eiram50
in reply to GranAmie

Wow, you went through it there! I am so glad to hear you’ve recovered well and fantastic that you swim and sing.

I’ve never had cough in methotrexate and I’ve been on it for years- it was more just that all of a sudden I couldn’t get my breath and then they did xrays and tests. Initially, I was told I had emphysema but further test etc and lung specialist said scarring and frosted glass in lungs and this was due to methotrexate. I’ll be going for CT scan so will have a better idea after that if what’s going on.

I only asked the question because she was very clear and specific that people in methotrexate should have lung functioning tests every year.

Thank you for sharing your story.

Yes I have Marie. Generally only if I mention it but I am checked over, last time at my most recent Rheumy appointment (with a Registrar) in September. I don't know if you’ve seen me mention it before but I did have a spontaneous pneumothorax back in the '80's which is obviously in my records & always included in the report to my GP so this may has some bearing.

I don't honestly know if what the Pulmonary Specialist says is so, if it's consistent with the BSR's recommendations, might be worth a check though so you know. Apparently lung function tests may be considered in those with pre-existing disease, no mention of imaging, other than prior to starting MTX.

Sorry I can't be of specific help.

Eiram50
Eiram50
in reply to nomoreheels

No, that’s really helpful.

I know my question/ reaction and I guess subsequent anger, is based in fear but I do genuinely believe that if this is in fact the case, of which she seemed absolutely certain and suggested someone had been remiss, then it is wrong that regular checks are just the luck of the draw?

Like everything else we face, I’ll get over it.

Thank you NMH

nomoreheels
nomoreheels
in reply to Eiram50

Yes, at the mo it's fear as you don't have the full story nor know what’s to be done but you're like me in that once you know what you're dealing with you can cope that much better, you can face it head on. It does guile you though when it's you who's affected & the associated Specialties don't sing from the same hymn sheet, they don't initiate investigations until the patient reports symptoms & then have to connect. The only positive I can think of is that incidences aren’t high enough to justify comprehensive annual testing.

Eiram50
Eiram50
in reply to nomoreheels

Thanks NMH, and you’re correct, it is driven by fear but also a real conviction that whilst, as you say, the incidences may well not be high enough to justify annual testing, but the risks are. But, it is what it is and I will manage whatever it is. I see my rhuemy soon so at least can have the conversation with him,

Hope you are doing as well as you can be and thank you.

Newest research on this front.

doi.org/10.3389/fmed.2019.0...

Eiram50
Eiram50
in reply to Agoodlife

Interesting. Thank you

Thanks Simba, interesting though no reference to general annual testing regardless of being symptomatic, only re treatment where it has been found there are pulmonary issues/disease or existing problems, this after diagnosis following symptoms. Eiram50's concern is that, as far as she/we are aware there are no guidelines setting out annual testing for PFT's for those on MTX, particularly those who have been taking it some time. Performance of PFTs routinely for diagnostic or prognostic purposes is still under debate, this despite the prognosis percentages revealed within this paper. The conclusion states Future studies should aim at determining the exact prevalence of RA-ILD in early stage RA patients and will certainly rely on PFTs and imaging with CT at baseline and during the disease course to help identify patients at high risk for progression.

Yes I think it. could be an idea to check with the BSRs directions. There are are quite recent ones.

I have already. Nothing there to suggest they're imminent either.

And the standing recommendations are from what year? Lots of new things happening in a very fast pace. For the pa to be vigilant of what is happening is always taking less risks and discuss with the doc.

2017, due for revision this year so from that I take it that there'll be no review until then so I don't see how any findings since publication can be added, I'm not aware of addendums anyhow. The point is the guideline stands despite new findings. Obviously this doesn't apply anyone diagnosed with a lung condition, testing & treatment is available then, just not general testing.

It does sound as though you know different though Simba. Are MTX patients having at the very least Spirometry tests annually in France?

Eiram50
Eiram50
in reply to nomoreheels

It’s interesting though isn’t it? The lung specialist was very clear about it. The tensions between specialities becomes very apparent .

nomoreheels
nomoreheels
in reply to Eiram50

Indeed not. My A&E admission from around 2 years ago has never been added to my RD notes even though it was suggested it should be by the radiologist.

Eiram50
Eiram50
in reply to nomoreheels

This, to me, is how mistakes are made? Surely everything should be on your health record, particularly hospital admissions, in light of the vulnerabilities we have and the meds that we take? So much for joint up working and the ‘team’ around the patient.

nomoreheels
nomoreheels
in reply to Eiram50

Yes it should! Human error it's called, not writing up notes for all medical professionals to be aware when the patient is in front of them presenting with symptoms, similar or otherwise, is what I call it. It's how the bløødy obvious is missed.

Eiram50
Eiram50
in reply to nomoreheels

To me, it is simply bad practice. Human error - it happens, but my understanding it’s when things are mis diagnosed, missed perhaps because other symptoms mask something etc. It’s nothing to do with not writing up patients notes and communicating with involved professionals? I would be held accountable, as a social worker and I simply cannot are why a medical professional wouldn’t be too.

Whereabouts are you based?

I started MTX last year and had xrays, CT scan and breathing function tests.

These are carried out at six month intervals.

I have a history of pneumonia and pleurisy.

Have you had lung issues in the past?

Eiram50
Eiram50
in reply to TheBoys

Hi. I’m in Edinburgh. No, I’ve never suffered from any type of breathing/ lungs/ chest issues. And I don’t wish to suggest that my rheumatologist isn’t anything other than good - I’ve never had cause for complaint in any shape or form. But it came as a real shock when she said that anyone who takes MTX should be having regular checks , to know I hadn’t and then raised the question, if I had this might have been avoided?

Maz63
Maz63
in reply to Eiram50

Hi Eiram50 I’m in Aberdeenshire and have no complaints in my care so far either, this might sound awful but I’ve been on other forums and removed myself due to negativity re our NHS. I might be way off mark but I believe personally anyway, our care is better in Scotland. I was diagnosed May 2019 and have been to Rheumatolgy 6 times with another appointment next week.

Eiram50
Eiram50
in reply to Maz63

Whilst I’ve had an issue recently, this has been about communication and consistency of information between specialities. It is not about any treatment I have received from The NHS - a service I love. Before I became a social worker, I was a nurse and have nothing but admiration for those who dedicate their lives to caring for others.

If you are in the UK and feel let down

See a solicitor and sue. The NHS is full of incredibly incompetent people as well as a few good ones. Too much variation from best practice, not enough reading patient notes in spite of their access to your records electronically. Only by rooting out these incompetent peope will things improve.

Eiram50
Eiram50
in reply to TheBoys

Thank you.

It’s just a real worry. Not just for me but all of us, if indeed this is what should happen. Prevention has to be better than cure?

Cwendyn
Cwendyn
in reply to TheBoys

Why would anyone sue an organisation that’s already strapped for cash? I find that extraordinary that it’s taking money away from patient care. Sort out the issues, but don’t sue them.

Eiram50
Eiram50
in reply to Cwendyn

Is this question directed to me? If so, I don’t believe I ever suggested such action. My post was about information.

TheBoys
TheBoys
in reply to Eiram50

No...i would sue them. In fact thats too light. Too many get off scot free with little or no rebuke. My best friends brother just died from sepsis due to massivei prescribing errors. Only 34 he was being treated for a BCC on his back. He only went in to have it removed on advice of his consultant. Due to now, admitted errors he is dead. Apologies, dont swing it.

I see and hear so many tales of problems in the NHS there needs to be some form of review. I am biased of course as three years ago several GPs mis diagnosed me with lumbago, back.pain when in fact i had pleurisy which led to collapse with sepsis.

Its all down to how you feel Eiram50. I m just bitter.

Eiram50
Eiram50
in reply to TheBoys

I understand why you’d feel angry and bitter. I’m genuinely sorry for your loss.

TheBoys
TheBoys
in reply to Eiram50

I would add that my rheumatology dept in a bug east london hosp trust arrange to have me seen by a Respiratory and Cardiac specialist every six months so far, do good..no lung damageor scarring. Take care x

Eiram50
Eiram50
in reply to TheBoys

That’s good news. You take care too.

Cwendyn
Cwendyn
in reply to TheBoys

I really think it’s wrong to sue an organisation that will take money from patients as that’s what it does. It’s not from some magical insurance pot, but directly from patient care. I can understand it if the money is needed to fund long term care due to loss of earnings or specialist care, but not in any other situation just to add money to a bank balance. I’m an ex nhs governance manager and this area was my remit, hence my knowledge of where the money comes from.

I understand why you’re angry, but it’s not the fault of other patients. I know how doctors feel when they make errors. They’re absolutely mortified. They went into medicine to help people, not hurt them. They are human the same as you and me. They’re not infallible.

34 years old is dreadful, so young and I can understand why you are angry.

crashdoll
crashdoll
in reply to Cwendyn

Hi

Cwendyn it doesn’t come from a pot of money that is ring fenced for patient care. There is money that is totally separate. People have a right to seek financial recompense for when there is clear medical negligence. Due to my work, I’ve come across a number of people who need 24 hour care from social care workers directly as a result of medical negligence. They are often awarded several million pounds. The money won’t give them a life back but it ensures they always have care. I know it’s a tricky topic but lives can be ruined by medical errors.

Cwendyn
Cwendyn
in reply to crashdoll

Lives can be ruined and I don't disagree with you - people do need the money to care for dependents etc... Patient care monies aren't ring fenced either, in fact, block payments went years ago.

Agoodlife
Agoodlife
in reply to Cwendyn

I wonder if all the money put on symptom care would have been put in preventive care (also in medicine and research) could be compared In any way?

Cwendyn
Cwendyn
in reply to Eiram50

No, not you 🙂

I’ve been on Methotrexate for three weeks. My dermatologist has organised for blood tests every 2 weeks and I’m booked with cardiologist next month. No mention of lung functions test with her. However, because I was on steroids first for my sarcoidosis I had lung function appointments every 3 months

Eiram50
Eiram50
in reply to Damali64

Thank you. I wish you luck with your treatment. Regardless of what’s going on for me now, methotrexate was helpful and I never had any trouble with it.

Crystal66
Crystal66
in reply to Damali64

I wish you well.God bless

Eiram50
Eiram50
in reply to Crystal66

And you

Hi Eiram50.

Well,it seems a mix bag of health issues more with meds than the condition.I’ve had for years asthma and although I have an attack on rare occasions,it’s nothing to be concerned about.It’s mild.My RA had been diagnosed perhaps 20 years later and after trials of meds for the RA,the proper meds it seems are accurate for me.Only one year ago my Rheumy had put me onto MXT as pain was becoming intense.So making the story short,each visit I’ve had with my Rheumy he’d ask if I had any issues with my lungs,I’ve said no.He would not press the issue only checked my blood pressure and advised me to have a blood test next visit.So it depends on each Specialist how they apply their initial examination.Just keep up your visits and inform your health rep of any changes.We are not all the same even when we use the same medication.All the best to you,and how I get through is being positive,and my Christian Faith helps me through.God bless

Eiram50
Eiram50
in reply to Crystal66

Thank you.

This is an issue though and, a concern. Not once in all the time I’ve been in MTX have I ever been asked anything about my lungs/ breathing - never mind have them checked.

I’m sorry but I don’t agree that it should ‘depend’ on the specialist. Whilst every person has a different experience of methotrexate, the risks to each are the same therefore, in my mind, we should all be given the same explanation and be afforded the same preventative checks and balances.

The asthma is of no significant concern to me - the scarring and frosted glass modules on my lungs are.

Crystal66
Crystal66
in reply to Eiram50

I’m sorry,I meant to say that before MTX I was asked about any problems with my lungs.When I was prescribed it,I have not been asked the question since.But I wasn’t implying that specialists we should Solely depend on.My GP fills in the gaps.But I do not agree that the same explanation should be for all.The reason?

We are not of the same structure,plus one would have other conditions on top of RA,which are added to health problems,so we are given appropriate medication that could or could not be the problem.Really,I cannot agree Methodrexate is the culprit.All I know is it’s given me comfort so that I can deal with other problems.All meds come with risks!What suits some doesn’t suit others.All in a nutshell,leave it to those experts who deal with a multitude of problems on a daily basis.What are we relying on if they weren’t there for us?It is what it is

Eiram50
Eiram50
in reply to Crystal66

The same explanation, with regards to the potential risk(s) of taking methotrexate should, without question, be given to all. The risks may increase or decrease depending on the person, and all the variables you mention but the risk of the medication itself, surely remains the same.

Equally, and with respect, I do not ask you to agree that ‘methotrexate is the culprit.’ I would be confidently guided by the specialist who was quite clear, in my case, it is.

Thank you for your input and response.

Crystal66
Crystal66
in reply to Eiram50

Thank you for a quick response.I mean no offence by my response,after all, we all have difficulty dealing with and adjusting to our disabilities .Pehaps we may be on opposite sides of the world,they most definately have different methods of treatments,but bottom line is each of us may be able to help one another that can make a lot of difference and benifit those who are in early stages of their condition.I was in the dark myself those years ago,as no support was given the way it is today.

I found the most crucial part of getting to where I am today is being positive,keep striving,don’t let it beat me.

I wish you well whatever it is you must do on your journey.You seem to be a strong willed person,and that’s good.Stay strong.🙏

Eiram50
Eiram50
in reply to Crystal66

I agree and as long as we all respect each other’s opinions and experiences, without judgement, then it remains a helpful and positive exchange.

Crystal66
Crystal66
in reply to Eiram50

👍defiately

I’m sorry for what you’re going through Eiram50 💖 I’ll reply properly later as I’m rushing off now x

Eiram50
Eiram50
in reply to crashdoll

Hope you’re doing a little better Sophie. Marie

crashdoll
crashdoll
in reply to Eiram50

Hi Marie, I had a baseline chest x-ray before starting biologics in 2013 but not methotrexate which I started in 2010. I only had lung function tests when I became symptomatic. My rheum said RA associated lung disease is rare in seronegative patients, rare but not impossible! I know you have particularly aggressive disease which I understand to be associated with systemic disease. Therefore, I’m surprised and upset for you that you haven’t had closer monitoring. Even if the guidelines are not clear, rheumatologists should use their initiative and refer people for lung monitoring if they are showing signs of having RA that is associated with lung disease i.e. if they’re in a certain high risk are group.

Do you know exactly what’s going on with your lungs yet? Sending big hugs. It’s totally rubbish. I empathise. 💞 xx

Eiram50
Eiram50
in reply to crashdoll

That’s the thing Sophie, I’ve never had any issues with my breathing / lungs. I had surgery on my pelvis and wrist in September then about six weeks later just

Couldn’t get a breath and ended up in hospital on oxygen 24/7 for a week. The consultant told me I had no chest infection etc but he said I had emphysema. Anyway, referred to respiratory clinic and had huge amount of tests and had appointment with specialist last week. She told me I’d developed asthma - never had it in my life but she said people either get it in childhood or the peak time of when they hit 50-60. She said I didn’t have emphysema and xrays etc showed scarring and ground glass in my lungs. She asked how long I’d been taking MYX and how had my annual lung examinations been. Told her five years and that I’d never had any long tests. She seemed shocked and said all long term users of MTX should be having annual checks? She said it hadn’t been caused by RA but by the methotrexate?

She arranged CT scan where I was there and said I’ll get the apt very soon and then we would discuss things further.

crashdoll
crashdoll
in reply to Eiram50

I was trying to say that you’re right. You should have had annual monitoring, regardless of whether you had symptoms or not. It’s not for you to say you have symptoms and then to arrange tests. They should have been monitoring you. I understand you must feel so disappointed in this. It’s ridiculous and unfair. xx

Eiram50
Eiram50
in reply to crashdoll

Ah, gotcha. I agree. I think everyone on MTX should be monitored if there’s even the slightest risk of lung issues.

I’m more frightened than disappointed, if honest. And I just can’t shift from thinking surely, prevention has to be better than cure - for patient and the nhs?

Anyway, I don’t know or the whole story yet so will try to remain optimistic.

I am a strong person and like you and everyone else, cope with the trauma ( and it feels like trauma) this disease throws at me but just recently, I can feel my body slowing down and just beginning to feel drained, seems like one thing after another. It bothers me .

Thank you, for your kind words and support x

I’ve never had a lung test and I’ve been on mtx for 18 years

Does it say anything about that in the patient information leaflet that comes with your Methotrexate? I often feel doctors treat their own part of your body without bothering about how it affects other parts.

I’ll read it again as when I initially read it, I really only took in dose and common side affects

New ill effects on RA meds are constantly surfesing. Not only Mtx. People are different and react differently that’s true but it doesn’t change the fact that the ill effects are there always and should be and are monitored always because they are for symptoms not to cure. The responsibility mainly lies with doctors and pharma very little with the patients.The oath taken by doctors still by taken by all doctors is “ First you shall not harm”.

Eiram50
Eiram50
in reply to Agoodlife

Agreed.

I was in it for 24 years and never had lungs checkec.

Eiram50
Eiram50
in reply to Beviejon1

It appears many have been on it for a significant number of years without checks. This may be for a number of reason- changes in understanding of drug, of guidelines, of professional practice etc. I don’t know.

All I do know, is what the lung specialist advised me and that it’s a real concern to me and a conversation I will have with my rhuemy consultant. But thank you f pre your response

KittyJ
KittyJ
in reply to Eiram50

I’m going to follow this up next appointment too.

Eiram50
Eiram50
in reply to KittyJ

Let me know how you get in please, kitty x

KittyJ
KittyJ
in reply to Eiram50

Will do, it’s not for a while yet but I’ll definitely ask. X

Eiram50
Eiram50
in reply to KittyJ

On not in**

Found this from 1996

ncbi.nlm.nih.gov/pubmed/863...

....periodic pulmonary function tests did not allow us to detect MTX-induced pneumonitis before clinical symptoms. Therefore, we recommend that these tests should not be systematically performed while patients are receiving treatment.

Also nras.org.uk/the-effects-of-...

Methotrexate (MTX) is one of the most important disease modifying anti-rheumatic drugs (DMARDs) used to treat RA. It is very rarely associated with an allergic lung reaction, called hypersensitivity pneumonitis (in less than 1% of people). This often occurs early, well within the first year of treatment, but can be delayed up to 3 years after starting treatment. Patients become unwell over a few days, with breathlessness, fever and malaise. Stopping MTX and giving high dose steroid for a short while is sufficient for the majority of cases to recover. However, because hypersensitivity pneumonitis can be severe and even life threatening, people with pre-existing lung disease (such as COPD) are not started on MTX if it is felt that they might not survive MTX pneumonitis should it occur.

Apart from this reaction, and the possibility of increasing rheumatoid nodules, there is no evidence that MTX makes it more likely that any of the other RA associated lung complications will occur, such as ILD, and on the contrary may be protective by so effectively treating the underlying RA disease process.

HTH (Hope that helps) Cheers

wishbone
wishbone
in reply to Hezekiah

Interesting, not sure my my chest consultant would entirely agree with that though. He advised me to stop taking methotrexate not because it could exacerbate my fibrosis (god do I hate that word!) but because the lung condition it can cause, presumably pneumonitis, can mask its progress.

He also said it's possible that baricitinib, which I was due to start at the time, could help people with lung disease. He then added that it could do the opposite too! :-O He named a few other drugs which may be showing indications of treating lung disease the most promising being mycophenolate. That said, he did not seem very optimistic about any of them effectively treating lung disease.

edit...I have not read the attached links in your post just in case it reveals even more bad news about my condition as I know more than enough as it is!...head half buried in sand syndrome if you want. :-)

Hezekiah
Hezekiah
in reply to wishbone

Hi Wishbone, you're right, it is clear that there are differences of "opinion" here.

mayoclinic.org/diseases-con...

Mayo Clinic (for whom I have great respect), say

"Many drugs can damage your lungs, especially medications such as:

Chemotherapy drugs. Drugs designed to kill cancer cells, such as methotrexate (Trexall, Otrexup, others) and cyclophosphamide, can also damage lung tissue.

Anti-inflammatory drugs. Certain anti-inflammatory drugs such as rituximab (Rituxan) or sulfasalazine (Azulfidine) can cause lung damage. "

On the face of it, this seems different to NRAS who seem to be saying that MTX may be protective, preventing RA/RD from causing lung problems. Unless Mayo Clinic is talking in terms of the very heavy doses of MTX used on cancer patients, rather than the lighter dosing for RD patients?

Blooming complicated, eh, what?

wishbone
wishbone
in reply to Hezekiah

Tis complicated to be sure. More so as my consultant initially reckoned that RA inflammation was the cause of my lung condition, which sort of fits in with what had happened to me over the previous couple of months before diagnosis. Then again, during my last appointment a couple of months back, I asked him if high inflammation could exacerbate my condition?...to which he replied no because it works off a different mechanism - his words not mine! :-O Go figure as our American chums like to say. :-)

Hezekiah
Hezekiah
in reply to wishbone

Interesting to read the other thread when you were pleased to see both a Rheumatology and Respiratory consultant at your consultation.

wishbone
wishbone
in reply to Hezekiah

That was my first rheumy appointment at that particular clinic/hospital and the first time I've seen that rheumatologist, who I believe is just temporary until a proper replacement is found following my old rheumies retirement nearly 18 months ago.

I was surprised to see my respiratory consultant there. Not sure what to think of him as he seems to contradict himself now and again. I don't want to be too critical as he does seem to be right in saying that my lung condition was due to RA rather than meds.

Eiram50
Eiram50
in reply to Hezekiah

Isn’t this just suggesting that in a round about way, because MTX is treating the underlying RA, it could be seen as protective? But what if it is not the RA that’s causing the damage to lungs but, the MTX itself?

Hezekiah
Hezekiah
in reply to Eiram50

Sorry Marie, Because of the structure of this thread and the way posts are organised, I've lost track a bit.

Does it help if I quote NRAS site again (same link as previous)

"Nonetheless, when RA lung disease is found to get worse it can be hard to decide if this is because the existing therapy is not completely effective at suppressing the inflammatory RA process or alternatively because the therapy itself is having a direct toxic effect on the lung or an indirect effect as a consequence of chest infections."

I also found this (rather depressing and undated article)

hopkinsarthritis.org/arthri...

"Respiratory complaints may be under-reported and/or unrecognized in RA patients with lung disease as individuals with RA are generally less physically active due to joint pain and chronic fatigue and thus less likely to experience symptoms such as dyspnea [breathlessness] on exertion. "

Which perhaps supports one of your earlier points to the effect that regular screening/checking is highly desirable and should be an acknowledged element of treatment as provided by the medical profession?

Eiram50
Eiram50
in reply to Hezekiah

Yes. It is however not my thought per se, but that if the specialist. But I think if there Is any level of risk with the drugs we are prescribed, we should be screened accordingly. Too late, is simply too late.

Thank you, that’s really helpful. It had not been suggested that I may have Pneumonitis or ILD but frosted glass? It was also clear that what she was saying is that the scarring / glass was not a result of the disease but of the MYX.

I think what’s becoming more clear is the tensions between medical specialities and how this might impact, often negatively, on the patient.

But thank you for your response.

Marie

Marie, I would agree with you that there are likely to be tensions between medical specialities, and different viewpoints. The specialisms are not good at joining up and overviewing and cross-fertilisation sadly.

I have never heard about this until now. Before I was put on MTX I had my lungs checked, it has never been done since even after I stopped taking it which is a real surprise as over the years I have had a lot of respiratory infections.

Will check in with my Rheumy

Eiram50
Eiram50
in reply to Paisley58

I had never heard it either - nothing about my lungs was ever mentioned to me not any lung function testing before commencing MTX - it is only now there is an issue that the lung specialist told me the frosted/ ground glass and scarring in lungs was due to the MTX and that I should’ve been having annual testing, as should all on long term use of MTX.

Paisley58
Paisley58
in reply to Eiram50

Thanks for posting this and providing the information, as I wil be taking this up with my team as I have had lots of chest infections and pneumonia twice and none of this was ever said to me.

Eiram50
Eiram50
in reply to Paisley58

I think what it’s highlighted for me, and hopefully not too late, is a lack of communication and joined up working, as well as the tensions between medical specialities - potentially at the detriment of the patient.

Paisley58
Paisley58
in reply to Eiram50

Amen to that

I am no longer on it but they always listened to my lungs and said they were clear. Never had a test only the every three months bloodwork. I got very sick while on it after a year and a half.

Eiram50
Eiram50
in reply to BonnieG123

Can I ask, when you said they always listened to your lungs, who did and when did this take

Place?

BonnieG123
BonnieG123
in reply to Eiram50

Whenever I went to rheumatologist for three month check or to my primary care doctor. I did not know, however, that it could cause lung problems.

Eiram50
Eiram50
in reply to BonnieG123

Apparently so. It’s not a risk that was ever, on beginning to take it, made explicit to me. Unfortunately, it’s only after the damage has been done that I’m left with all the questions.

In all the years I’ve been under rheumatology and on methotrexate ( and leflunomide, biologics), not once have I had any checks concerning my lungs.

Whilst methotrexate can affect everyone differently ( although commonality re adverse affects), the risk factor of the drug itself must be the same and therefore, my thoughts would be that there should be no variations in the checks people are subject to? Surely it should be the same for everyone, and not dependant of what rheumatologist one sees?

Eiram, I hope all goes well for you here on.

Eiram50
Eiram50
in reply to BonnieG123

Thank you so much. Best of luck with it all to you too.

Marie

I will now that you mentioned it

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